Is your child’s A1c being really stubborn? Do you wonder what a “super bolus” is? Are you considering an insulin pump or continuous glucose monitor (CGM)? Here are six books to help parents manage their child’s type 1 diabetes.

Understanding Insulin Pumps: For me this book was the perfect amount of information–not too little, not too much–to get me prepared to start the insulin pump and demystify basal rates, the risk associated with DKA with regard to the pump, etc.

Think Like a Pancreas: This is my go to book when I think about making changes to I:C ratios and testing basal rates. Everyone dealing with diabetes should have this book on their shelf.

Read more about Think Like a Pancreas: A Practical Guide to Managing Diabetes with Insulin–Completely Revised and Updated written by Gary Scheiner and purchase your own copy.

Until There is a Cure: I say time and again that I think it’s important to keep our children in the best of health for the time if/when there is a true cure for diabetes. Gary’s book Until There is a Cure is founded on exactly that premise: let’s do the best we can with the current and emerging technologies, medicines, and approaches in diabetes care.

Emotional Eating with Diabetes: Ginger’s book Emotional Eating with Diabetes intrigued me for a couple of reasons. First, I think that it is all too easy to develop food issues when you have diabetes because there is so much pressure about and emphasis placed on food. Second, I know that I don’t eat as well as I should and thought perhaps it would give me some insight into my own eating habits, even though I am not the one with diabetes.

Insulin Pumps and Continuous Glucose Monitoring: I think this book would be a great resource for people exploring the use of an insulin pump. I wish I had read it as we began thinking about a pump a few years ago. It does touch upon all those topics listed on the cover. But I think the book provides more general knowledge than nitty gritty how-to.

Summary: In this month’s round up of 3 little diabetes things, I’m sharing an article about CGM use in people who don’t have type 1 diabetes, an article and video showing how an abducted woman used her insulin pump to escape, and why I snap a photo when there is a diabetes device malfunction.

I sometimes have a “little” something to say about diabetes…

CGM Use in Non-T1D

Given that CGM costs so much for people with type one diabetes who actually need to use a continuous glucose monitor to manage their diabetes, I’m not sure how impressed I am that some people without diabetes have the extra income to use it just because they want to. I hope that until there is universal coverage for people with T1D to use CGM that insurance companies won’t foot the bill for people who don’t have diabetes.

Escaping a Dangerous Situation

Add this to one more thing you can use your insulin pump for. This young woman was abducted and placed in her trunk. She used the light from her insulin pump to find the handle to open the trunk from the inside and escape. This is further proof that people with T1D are badass. So glad to see that she is safe.

Take a Photo

On the rare occasion that we have a malfunction of one of our diabetes devices, I try to take a picture of the error message so that I have all the information when I call the company. This time (pictured right) I was able to reset the personal diabetes manager (PDM) for her insulin pump and we were back in business. But when we are away from home and have a problem it’s good to have all the info, including the customer support phone number and reference number, right there.

Alan Thicke Dies

His son, Brennan, was diagnosed with T1D at age 4 after a revelation at a family reunion. Alan’s stepmother, a nurse, noticed that Brennan was exhibiting the symptoms of type 1 diabetes – including extreme thirst and excessive trips to the bathroom. In a recent interview, Thicke described how the first months after Brennan’s diagnosis were especially stressful and scary: “After hours of cajoling and chasing him around the house I had to pin him to the floor to give him his [insulin] shot. He was kicking and screaming.” When Thicke was reduced to tears, young Brennan came to a realization. “He recognized he wasn’t being punished by getting a shot, and that the shots were hurting me almost as much as they were hurting him… That changed our whole relationship. He realized we were a team.”

Fight T1D Kids

This made me laugh so hard. Q thought it was pretty funny too. My money is on kids with diabetes…they are pretty tough!

(Source unknown.)

FDA Approves Dexcom G5 For Insulin Dosing

We are still using the Dexcom G4, so I can’t speak to the accuracy of the readings given by the G5 system. But only having to do morning and evening calibrations and relying on the Dex for blood glucose readings for insulin dosing decisions sounds great.

I do have a concern that insurance companies will stop covering as many test strips for patients who also use Dexcom.

What do you think about trusting Dex for dosing decisions?

The U.S. Food and Drug Administration today expanded the approved use of Dexcom’s G5 Mobile Continuous Glucose Monitoring System to allow for replacement of fingerstick blood glucose (sugar) testing for diabetes treatment decisions in people 2 years of age and older with diabetes. This is the first FDA-approved continuous glucose monitoring system that can be used to make diabetes treatment decisions without confirmation with a traditional fingerstick test. The system was previously approved to complement, not replace, fingerstick testing for diabetes treatment decisions.

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Pocket Innerwear

One of the challenges of using diabetes technology, such as an insulin pump or continuous glucose monitor (CGM) is carrying the device with you. For those using a pump with tubing, you need someplace to clip or hold the pump. Pocket Innerwear has offered a solution in their T1D Techwear.

I know Q doesn’t always have a pocket or a belt loop to attach her CGM receiver. And as she’s gotten older, she has wanted to wear a waist pouch less and less. Sometimes she clips it to her supply bag (a purse she carries), but there are times during activities that she just needs the receiver on her and doesn’t have anyplace to keep it. What I like about the T1D Techwear tanks is that they can be worn as a layer (or by themselves!) and they just look like any other layer of clothing.

This summer the company sent us a new tank, great because Q has outgrown the one she had been wearing. Q chose the “Summer Special T1D TechTank” which has two cute paisley pockets. If you want a layer that’s more inconspicuous, they also offer styles with pockets that match the color of the tank, for instance white or black. They have styles for kids, men, and women including tanks and briefs. And if you have a tubed pump, the pockets have a hidden buttonhole for the tubing.

These public appearances by d-tech help to normalize it for d-kids like ours. I know in the teen years some girls become self-conscious about wearing their pump or CGM where others might see it because they don’t want to bring attention to it or feel different.

So I’m going to tell you the funny story about showing this video to Q.

Me: Come watch this video. Q: Okay. Me: Do you notice anything? Q: Um, one of them is much taller than the other? Me: Notice anything else? Q: No.

She watched the entire video and didn’t even notice that Caroline was wearing a DexCom! I guess this is good in a way. It is so normal for Q that she doesn’t even notice it when it’s front and center in a video of someone she doesn’t know. She didn’t see diabetes when she looked at Caroline, she saw her height.

I look forward to seeing more from Caroline Carter in the next year during her reign as Miss New Hampshire and during the Miss America competition. Good luck, Caroline!

I was recently asked what I hope for in terms of diabetes management 10 years from now or when Q goes to college in (gah!) seven years.

I said that I hope diabetes management is less of a burden for her and less for us, as parents, to worry about, especially if she decides to go to college far away.

I am thankful that the Affordable Care Act means that she can stay on our health insurance plan until she is 26 years old. She will be able to have good coverage while in college and grad school, if she chooses, and while she is doing an internship or getting that first entry level job in her field.

I mentioned that I hope smart insulin is available because she might have to deal with fewer low and high blood sugars.

And the acme for us is the artificial or bionic pancreas.

No, a bionic pancreas isn’t a cure. But we feel that it will take away much of the decision making one with diabetes has to make every day and she will be able to eat and be active without worrying so much about high and low blood sugars. Plus, in college, she won’t have mommy there to respond to her CGM alarms in the middle of the night!

As much as we are looking forward to the bionic pancreas as the ultimate technological treatment for diabetes, there are three issues that we all need to consider. I’ve dubbed these the “AAA’s of Diabetes Management.”

Available: There are several clinical trials of an artificial or bionic pancreas currently underway by several different research groups and companies using a combination of insulin pumps and continuous glucose monitors and algorithms. Dexcom has been pretty quick to get their latest CGM versions approved by the FDA, but approval might not come so quickly for a medical device that will literally keep someone with diabetes alive and could literally kill them if it fails. We hope that the bionic pancreas is FDA-approved and to market by the time she goes to college.

Accessible: As with any diabetes technology, not every insurance company will cover an insulin pump or CGM. If the bionic pancreas is not being covered by insurance companies, it will be difficult for patients to get it into their own hands.

A focus of the 2015 JDRF Children’s Congress, which our family participated in, was the access of CGM’s to those on Medicare. You might ask why it’s important for us parents of young children with diabetes to even care if a senior citizen with type 1 diabetes gets their CGM covered by Medicare, but it is important. Many insurance companies look to Medicare’s guidelines of coverage when determining what they will cover for their own policy holders. Getting devices like insulin pumps, CGM’s, and any diabetes technology and medicines coming down the pipeline covered by Medicare is important because of the trickle down effect. The Medicare CGM Access Act of 2015 would amend “title XVIII (Medicare) of the Social Security Act to provide Medicare coverage of continuous glucose monitoring (CGM) devices furnished to a CGM qualified individual. ”

As with any new technology, insurance companies may not provide coverage right away and may not grant approval for those wishing to start using it. It has been a fight for many to get insurance companies on board with insulin pumps and CGM’s, not to mention covering the number of test strips one reasonably needs to stay on top of their blood sugar. My hope is that companies bringing the bionic pancreas to market work with insurance companies to show that it has great results and is worth covering. Hopefully they can show that it lowers A1c’s, reduces diabetic ketoacidosis (DKA), reduces severe hypoglycemia requiring medical attention and the use of rescue glucagon kits, reduces long term complications such as diabetic retinopathy and neuropathy, and reduces incredibly costly hospital stays.

Affordable: It’s not enough that a new technology for treating type 1 diabetes is available if we can’t actually pay for it. For some families the financial burden of diabetes management can be catastrophic. Even for middle class families, the costs of insulin, diabetes supplies, and technology can eat into a family’s budget and savings. For PWD’s in their 20’s just starting out, there may not be disposable income to cover more than just the basics needed for care.

I am afraid that the patient cost of a bionic pancreas is going to be out of reach for the majority of people living with type 1 diabetes in our country. I do realize that it takes quite a bit of capital to engineer the hardware, fine tune the algorithm, put the system through clinical trials, and ultimately get FDA approval and get to market. I realize that companies need to recoup these costs and this usually means passing it along to customers. But a bionic pancreas system that is so expensive that most people can’t afford it doesn’t do much to improve the lives of people with diabetes.

My Hope: A bionic pancreas that can keep a person with diabetes within a tight blood glucose range without constant patient decision-making and intervention can have enormous positive effects on long-term physical health and mental health, both reducing complications and reducing stress and burden. As the various artificial and bionic pancreases come to market, I hope that they become not only available, but also accessible and affordable for those people with type 1 diabetes hoping to reduce the amount of focus that diabetes takes each day so they can live life more freely.